Do Any Biopsy-positive Celiacs Get Offended When Someone With

[Nantzie]

As far as the gluten intolerance goes, I do not consider that the same thing as celiac. Correct me if I am wrong, but I have a few friends who say they are gluten intolerant, diagnosed by a dr too. They stay away from gluten for the most part but eat it when they want to, and they just take a digestive enzyme tablet with it. If you have celiac, you cannot take a supplement and eat gluten when you wish, so I see them as very different illnesses. Perhaps I am misled, but this is what my friends do and their dr's told them to do. When they heard I had celiac they told me they would give me the name of the supplment so I could eat that too. They didn't understand celiac is different and you cannot have any gluten at all, even with a supplement.

See, that's the thing. That's not at all what we're talking about on this board when someone says they're gluten intolerant.

When we say gluten intolerant here, we mean hardcore celiac symptoms, glutened just with cross contamination, hurting for days if we get glutened, couldn't pay us enough to even try it again. It's basically celiac without positive tests.

Hopefully your friends aren't truly gluten intolerant because that doctor's advice could cause them many years of pain and further health problems. Hopefully their stomachs just bug them a little bit when they eat gluten and that's all it's ever going to be for them.

As far as the information not getting to me I do assume that my address got misplaced, even with the cold shoulder. But I am in no mood to be a one-woman advocacy group within a group that needs more proof than both of my doctors. It's the cold shoulder that bugged me. But, like someone said, maybe she's just the one who is picky in the group.

I've thought about starting my own celiac group, but it's a lot of responsibility isn't it? I'd be worried someone would get sick, which is kind of silly because our family is all gluten-free, even the dog .

I think we need to find a new phrase because intolerant make it sound like something you can still eat. Like lactose intolerant.

Any ideas? The thesaurus was no help. It suggested "fretful" which is even more insulting than intolerant.

Nancy

[gadgetgirl]

Hi,

I'm new here (to posting that is - been lurking since early October). I'm really glad this topic came up because I am going out to a big dinner with friends Saturday that I haven't seen in over a year and am dreading the questions that will come up with I give the waiter my bag of rice pasta to cook up for me. My anxiety lies with the fact that I am not "officially" diagnosed. I had the Enterolab tests (genes for gluten intolerance - 2 copies + active gluten, dairy, soy & yeast intolerance) done along with another Elisa test (where I sent in the sample) which also showed gluten/dairy/yeast immune system responses.

As far as I am concerned, I don't need to take this any further because I feel so much better since cutting all gluten, dairy, soy and yeast out of my diet. And furthermore, I don't need any more black marks on my health history to interfere with getting health insurance - I was denied when I was much younger because of my asthma and I have more weird stuff on my record now.

Having said all that, I still feel weird when people start asking me questions on how I determined my gluten sensitivity - like they will think I am some kind of hypochondriac. These feelings are rooted in childhood when my mother thought I was faking my asthma to get out of going to school. Oh yeah, like I wanted to struggle for every breath. My dad thought I just wasn't breathing right. I took being on an ventilator in ICU when I was 28 after having almost died from a reaction to penicillin to get them to understand that this was a REAL and SERIOUS medical condition I had.

Sorry for the ramble. Really appreciate all of you being here - it has been a valuable resource for me as I have made my way into my new eating habits.

Thanks!!!

[Sophiekins]

I admit to being mildly irritated when someone claims to be "gluten intolerant" and then heads gaily for the buffet, only to spend the next hour moaning about how horrible she's going to feel. . .but I have no problem with people claiming the label who feel half as crappy as I do after being glutened.

At the same time, I also have to admit to being angry as hell (whoops. . .can I say that?) with those who continue to insist that a biopsy is the only way to accurately diagnose celiac disease. When I was diagnosed, I had been suffering for seven years, and when the blood work came back, it was so positive they were worried that the lab had made an error and insisted on retesting me. When the results came back the same, the doctors conferred, and concluded that gluten free was the only way for me to go, and that it had to happen immediately for my health. Six months later when they could finally register me with a gastroenterologist, he re-ran the blood work and discussed my health, and came to the conclusion that it was too dangerous to perform a gluten challenge just for the sake of a positive biopsy. So he didn't. His opinion (supported by several other doctors) is in my permanent medical file. . . and yet I have encountered medical officials from doctors to nurses and paramedics, as well as health officials, nutritionists, etc, and workers comp tribunals (and even the taxman!) who refuse to admit that I have celiac disease because it wasn't confirmed by biopsy!

Can I suggest calling the interim step between 'gluten intolerance' (buffet-moaner) and celiac disease "gluten hypersensitivity"?

[tl2277]

I admit to being mildly irritated when someone claims to be "gluten intolerant" and then heads gaily for the buffet

...

Can I suggest calling the interim step between 'gluten intolerance' (buffet-moaner) and celiac disease "gluten hypersensitivity"?

Absolutely. Or just gluten sensitivity. Obviously, many people on this board have "sensivities" to other things, and I for one don't feel too bad cheating on lactose and taking enzymes, but I don't say I'm lactose intolerant, I say I'm "sensitive" or "mildly" or "temporarily lactose intolerant" or go into the whole celiac schpiel about damage and healing before I can eat hard-to-digest foods. Of course, this frustration about those who confuse others about what we can and can't do also goes out to many biopsy-proven celiacs who cheat openly. And from my understanding, those buffet moaners who know they'll feel bad, but do it anyway, are the reason the medical community decided there needed to be a "gold standard"--so they know they can't cheat. Unfortunately, it now works the other way around too.

What frustrates me is that a negative test can't show you don't have it. So a challenge is only good if you get a positive. It can't tell you absolutely it's safe for you to eat gluten.

If you are committed to lifelong gluten elimination, then I think we're all in the same club. If you are going to contribute to misconceptions about what a celiac can and cannot eat, then please do not call yourself celiac.

[ajay]

Any ideas? The thesaurus was no help. It suggested "fretful" which is even more insulting than intolerant.

Nancy

That's it! I'm "gluten fretful!"

I have to admit, sometimes I feel like a "celiac poseur." Because I don't know if I "really" am or not. The only possible reason I can think of getting tested is that if it happened to be positive, I could maybe finally convince my mom (who practically lives on immodium) to consider a gluten-free diet.

What I do know is that I went to Denmark in October, and there were these lovely pastries everywhere and (according to my sweetie) they were heavenly, and "the US should be ashamed of what we try to pass off as a 'danish'"...And I never tried even a nibble. Who could possibly give up pastries for life unless there was something seriously wrong?! Sheesh.

gadgetgirl, congrats on taking care of yourself and (forgive me) going with your gut. If it helps in your explanation to your friends, you know you have an immune reaction from your Enterolab results, and even the pseudo-gold-standard biopsy is an iffy process, so no hedging or apologizing!

[ironically, while accompanying my sweetie to a doctor's appointment, it came up that we had a gluten-free household. His doctor looked over at me and asked "Celiac?" and I'm the one who said, "well, I've never been tested..." So yeah, I'm a hypocrite. Do as I say, not as I did!]

Gamecreature, no support groups even in Chicagoland?!

And to be fair, when I first cut out wheat, I was one of those people who still 'cheated' now and then even though I knew I was gonna pay for it. As I spent more time off wheat, my 'cheats' got fewer and far between as I finally realized it just wasn't worth it. Some of us are a little slow on the uptake, perhaps. So maybe those "oh, I just take a pill" folks are kidding themselves... and setting themselves up for some nasty complications a few years down the road. If I honestly believed I could just take a pill, of course I'd try it. So I have some pity for the buffet-moaners, because they may very well be nuking their guts out.

[gadgetgirl]

gadgetgirl, congrats on taking care of yourself and (forgive me) going with your gut. If it helps in your explanation to your friends, you know you have an immune reaction from your Enterolab results, and even the pseudo-gold-standard biopsy is an iffy process, so no hedging or apologizing!

Thanks - unlike the "buffet moaners", I take my immune reactions to food just as seriously as my allergic reactions to penicillin and sulfa drugs. Maybe having had a near-death experience accounts for my attitude!

[ajay]

Thanks - unlike the "buffet moaners", I take my immune reactions to food just as seriously as my allergic reactions to penicillin and sulfa drugs. Maybe having had a near-death experience accounts for my attitude!

As you should! If your friends know you have the penicillin & sulfa allergy, maybe it would be easier to explain it as a wheat allergy. Then, if people ask about it, you can clarify. I know it's not really the same, but it can convey the appropriate amount of caution when it comes to exposure. And in a non-medical, informal sense, it's sort of true:

according to Dictionary.com Unabridged (v 1.0.1) -

al‧ler‧gy  /ˈælərdʒi/ [al-er-jee]

–noun, plural -gies.

1. an abnormal reaction of the body to a previously encountered allergen introduced by inhalation, ingestion, injection, or skin contact, often manifested by itchy eyes, runny nose, wheezing, skin rash, or diarrhea.

2. hypersensitivity to the reintroduction of an allergen. Compare anaphylaxis.

3. Informal. a strong dislike or aversion, as toward a person or activity: He has an allergy to hard work.

[floridanative]

I am shocked that such a support group exists that would care about why people can eat gluten. That saddens me so much. Our group in Atlanta has every type person you can imagine in it that can't eat gluten for whatever reason. Without that group I would not know nearly what I do about where to shop in town, where to eat out, etc. Personally I wished I'd just gone on the diet instead of getting that biosy proven dx on my records. I believe BCBS is trying to find a way to drop my health coverage now and if they can legally I'm sure they will. Due to enormously high non compliant rates on the diet, insurance companies think if we have Celiac, we're going to get lymphoma.

I've gotten off subject but to the original poster I'd day, I'd give them one more chance to send you info on the group in your area. I agree with the other poster who said those in leadership roles do take themselves too seriously sometimes but if you met the whole group, I bet you'd find many new friends to share your gluten free life experiences with. And if you don't like the group, try and start your own - even if it's with only one other person.

[Nantzie]

I love the "buffet moaner" phrase! "I really shouldn't eat this" (puts two helpings of pasta on her plate).

I was off running errands and thought of one for the gluten intolerant (walks like a celiac, quacks like a celiac) type.

>>>> Gluten Toxicity Syndrome <<<<

Sounds scary huh? That might make friends, family and even waiters pay much closer attention than they do sometimes.

Not sure how technically correct it is, but I know that the definition of a syndrome is basically a group of symptoms.

Nancy

[ArtGirl]

I thought I'd chime in here, too. Haven't read all the posts - don't have the time right now.

I consider myself gluten intolerant, not Celiac. The reason is that I have two genes for gluten intolerance, and no malabsorbtion issues (from Enterolab). Now, I'm 60 yrs old, and have had symptoms for probably 40 years if not more. You'd think that if I had Celiac that by now there'd be some major damage done, mega malabsorbtion, and would have developed other autoimmune diseases. This has not happened. The worse I've had is fibromyalgia, and that's not a disease, but was the result of my poor immune system struggling with the gluten, corn, and several other food allergens for so long. (By the way, my improved diet has put an end to FM)

The end result for me, however, is the same as one who is Celiac. No gluten.... for life!

[lonewolf]

As far as the gluten intolerance goes, I do not consider that the same thing as celiac. Correct me if I am wrong, but I have a few friends who say they are gluten intolerant, diagnosed by a dr too. They stay away from gluten for the most part but eat it when they want to, and they just take a digestive enzyme tablet with it. If you have celiac, you cannot take a supplement and eat gluten when you wish, so I see them as very different illnesses.

I guess this makes me frustrated. (Your friends, not your opinion.) I am gluten intolerant, never officially diagnosed, but went off wheat/gluten because I was told I was "allergic" to it over 10 years ago. When I stumbled across information about Celiac, I hadn't eaten gluten for so long that there was no way I could get a diagnosis. And doing a "challenge" was out of the question. I literally cried when I found this website - I had so many Celiac symptoms for my whole adult life it wasn't funny. Not one doctor ever mentioned it as a possibility. At least one of them tested me for food intolerances, and wheat, barley, rye, oats and gluten were all off the charts. But I was told that if I avoided them for long enough I'd be able to add it all back in. WRONG!

There is NO WAY I would take a pill or "eat it when I want to". I get the big D for 1-3 days after even a speck, and am miserable. But I can't claim to have Celiac. For me, being "gluten intolerant" is just as serious, but I think people see it as a fad disease or something.

I'm glad that someone started this thread. I started a similar one last night, but this one has gotten more of the type of responses I was hoping to get.

I appreciate that the community here is supportive of all of us who are gluten-free, no matter how we were diagnosed or found our way to the diet.

[Guest nini]

I am shocked that such a support group exists that would care about why people can eat gluten. That saddens me so much. Our group in Atlanta has every type person you can imagine in it that can't eat gluten for whatever reason. Without that group I would not know nearly what I do about where to shop in town, where to eat out, etc. Personally I wished I'd just gone on the diet instead of getting that biosy proven dx on my records. I believe BCBS is trying to find a way to drop my health coverage now and if they can legally I'm sure they will. Due to enormously high non compliant rates on the diet, insurance companies think if we have Celiac, we're going to get lymphoma.

I've gotten off subject but to the original poster I'd day, I'd give them one more chance to send you info on the group in your area. I agree with the other poster who said those in leadership roles do take themselves too seriously sometimes but if you met the whole group, I bet you'd find many new friends to share your gluten free life experiences with. And if you don't like the group, try and start your own - even if it's with only one other person.

I've completely lost my health insurance coverage too and I don't even have the biopsy proven dx... what a waste, huh? For now I'm on medicaid, but that won't last...

[Lisa]

This may be a premature post.......as I have not read through the last few pages.

This is not to brush anyone's feathers the wrong way, but just a thought on my own:

I am not a Celiac. I am a wife, a mother, an aunt, a member of a community, a participant in life, but I am not a Celiac. I am a person that has Celiac Disease. What is A Celiac?...It sound like a cross between and African gazelle and an Asian Yak.

[dragonmom]

Hi, I'm a biopsied(?) Celiac Spru person. My sister has had a blood test that came out negative, but she exhibits sooooo many signs of Celiac that I keep encouraging her to go gluten free just so she could feel better. So far I have not succeeded. I think that to give up gluten, etc. is hard enough without a snobery attached as to whether or not you had someone dig out a piece of your intestine or not.Go Figure

[Lisa]

This may be a premature post.......as I have not read through the last few pages.

This is not to brush anyone's feathers the wrong way, but just a thought on my own:

I am not a Celiac. I am a wife, a mother, an aunt, a member of a community, a participant in life, but I am not a Celiac. I am a person that has Celiac Disease. What is A Celiac?...It sound like a cross between and African gazelle and an Asian Yak.

I just wanted to add that I think this is a GREAT thread.......

[sspitzer5]

Good question! I tested positive through Enterolab, had a very positive dietary response, and have lots of related issues like osteopenia and another autoimmune disease. I had my biopsy after 5 months on the gluten-free diet and it was inconclusive (duh). My doctor said he thought it was Celiac even though the biopsy was inconclusive.

However, I find myself having to justify the diagnosis sometimes. For example, Stanford Univ has a Celiac center, but you must be biopsy proven to be treated there. So, that leaves me out. And, I've felt a little dismissed by some of the people I've talked to there.

At times I feel like a Celiac imposter! It bugs me that people sometimes act like I didn't get a real diagnosis and am some sort of disease-wanna be. I wish I had known not to stop eating gluten before the biopsy. But, there's no way I'd go through a gluten challenge just for a test result. I get so sick from such a small amount, I can't imagine eating it ever again.

S

[Mountain Mama]

See, that's the thing. That's not at all what we're talking about on this board when someone says they're gluten intolerant.

When we say gluten intolerant here, we mean hardcore celiac symptoms, glutened just with cross contamination, hurting for days if we get glutened, couldn't pay us enough to even try it again. It's basically celiac without positive tests.

Hopefully your friends aren't truly gluten intolerant because that doctor's advice could cause them many years of pain and further health problems. Hopefully their stomachs just bug them a little bit when they eat gluten and that's all it's ever going to be for them.

As far as the information not getting to me I do assume that my address got misplaced, even with the cold shoulder. But I am in no mood to be a one-woman advocacy group within a group that needs more proof than both of my doctors. It's the cold shoulder that bugged me. But, like someone said, maybe she's just the one who is picky in the group.

I've thought about starting my own celiac group, but it's a lot of responsibility isn't it? I'd be worried someone would get sick, which is kind of silly because our family is all gluten-free, even the dog .

I think we need to find a new phrase because intolerant make it sound like something you can still eat. Like lactose intolerant.

Any ideas? The thesaurus was no help. It suggested "fretful" which is even more insulting than intolerant.

Nancy

Thanks for clearing that up for me. Intolerant does sound like something you can have like the lactose thing. Maybe my friends have an allergy? Who knows! You are right, "I am gluten-fretful" just doesn't sound right! Ha! I didn't see that they never sent you info, that was rotten of them, regardless of their bad day or whatnot.

[martz]

Nantzi, I'm wondering if you are in the UK because the celiac UK assoc seems to require biopsy before acknowleding us 'intolerants'. Maybe I'm wrong and if so, I hope someone will enlighten me. But that's why I find myself here talking to all you lovely friendly Americans. I posted a few days ago to try and find mates here in SE England but no response. Think I made the mistake of inviting response from anyone following a gluten-free diet regardless of diagnosis. I know Brits are a conservative lot, and I think blind-faith in docs (and so-called science) is even more pronounced here, but honestly!!!! I came by here when I was diagnosed with Hashi's and, having followed Atkins on and off for about four years, strongly suspected gluten already. I have had health issues since childhood and they were getting worse by the year until eventually Hashi's showed up. I have always been fanatically into healthy eating (probably cause I always felt crap) but no amount of organics/supplements was halting the slow march towards incapacity. Now six months into totally gluten-free I feel as though I've experienced, in Nini's words, a 'miracle'. No exaggeration, I am not given to hyperbole. Of course my doc looks at me a bit funny but I don't care - my tsh has gone from 86 to 0.1 in six months. I know it could be the thyroxin but unlikely. Stupidly I ate out last week (without fully investigating the chef's prep methods) for the first time in six months and my reaction was extreme. That's why I wanted to find other sufferers locally because I would like to venture back into the land of dining out and felt I needed some old hands to guide me there. Also I would like to have some fellow sufferers for support. I think we in UK are a long way off understanding that gluten has many ways of destroying health besides classic celiac. My mum died of stomach cancer, complication of duodenal ulcer, and retrospectively she was sooo obviously GI but was never diagnosed. So I know how bad it can get and have spread the word to my family (still 'thinking' about it) and everyone else who will listen. But the resistence is fierce as you all know. You guys are the true scientists and eventually the rest will catch up. Thank-you all for the comfort and inspitation I have found on this board - I will always be grateful.

[debmidge]

I refer to myself as celiac when I'm talking to people outside the "celiac world". I also refer to myself as celiac on this board unless we're actually discussing celiac vs. non-celiac gluten intolerance. For one thing, it's easier to type.

Personally, I think that this board is living proof that there are at least a few variations of celiac, if not several. Some just have positive biopsies and some don't. Maybe someday rather than celiac vs non-celiac, it will be Type 1 Celiac, Type 2, 3, etc.

I contacted a local support group a few months ago asking about their group. She asked me how I was diagnosed and I told her that the blood and biopsy were negative, but I had the classic GI symptoms along with painful mobility issues which all went away with the gluten-free diet. She just kind of got cold after that, as if she thought I wasn't "celiac" enough. I asked her to send me information on the group, meetings etc., and I never got anything from them.

Of course that has always bothered me. Not so much that I didn't get the info I asked for, there could be a bunch of simple reasons why that happened. But once I said I was biopsy negative it was like oh, she's just ... (fill in the blank).

So I just wondered how everyone felt about this. Celiac vs. non-celiac and also presenting oneself with the label of celiac even though it's not technically true.

Nancy

Nancy: What organization sponsors that group? CSA? Or are they independent?

Deb

[Tim-n-VA]

With regards to the support group, it does seem a little strange that they would worry that much about the distinctions.

I don't care what someone calls themselves, even if they are clearly wrong. Life is to short to worry about other people's ignorance.

I have some mild concerns about the distinctions when it comes to advice. On that whole gamut from true celiac to gluten allergy with gluten intolerance in between, and the additional complication of other intolerances/allergies, it would be rare to find someone exactly like you. The fact that someone had a bad reaction to something is great to know but you need more than that single datapoint.

[spunky]

Just skimming through all of this very fast, this morning, not much time.

But as a non-diagnosed person who has come to greatly FEAR gluten because of my own experimentation during the past 9 months, and FINALLY happy to feel like a well person...not knowing how to explain that when I need to...and seeing something that just cracked me up on one of the above posts...I think,

The next time i need to explain my eating to someone I'll just say,

"I QUACK like a Celiac!"

Really, I am so happy ya'll have been here and shared your insights and stories, not only the biposied "official" celiac sufferers, but also the others who have ventured out into the non-gluten world on their own. Without having run across this site, almost a year ago, I'm sure I would still be depressed, sick and suffering.

Now I know that whatever you wanna call me...I just quack like a celiac !

[olalisa]

wow. what a great thread. And I'm happy that it has not deteriorated into an "I'm more celiac than you" contest here and really is about supporting one another. I happen to be "blood-test and biopsy proven" but I don't think that makes me any more intolerant than if I had never had a test, eh? That said, I'm actually glad that I have the "proof" to back it up because people do tend to look at you a little sideways when you REALLY comply with this diet (talking to waiters about cross-contamination and showing my triumph dining card, for example). Of course it isn't a problem at home, but in social situations it can be difficult. Seven months post-diagnosis and totally gluten-free, I am much less "apologetic" about my condition and honestly don't care if someone thinks I'm a hypochondriac or that this is a fad diet or whatever. I just do whatever I have to to take care of myself. But I have noticed that when people hear the word "biopsy" they tend to take it as more valid. I wonder if I'd be more apologetic without that. I hope not. You guys who aren't "official" just continue to take good care of yourselves, and ignore the sideways glances. You know how much better you feel, and how your health has improved. There's your proof.

[tl2277]

okay, sorry for posting this on two threads if you have read the "not truly celiac" thread, but i wanted to say this here too:

when it takes 11-13 years on average for doctors to diagnose celiac, and so much about celiac, gluten intolerance, and gluten sensitivity is still unstudied and unknown, i don't think anyone has a leg to stand on for not crediting people with diagnosing themselves based on something that actually succeeds in making them feel better. i have been reading about disability studies, and it is amazing how long patients have been complaining about doctors discrediting what patients KNOW about their bodies. something needs to change.

if your doctor doesn't respect your intuition or what you know to be true about your body... find a new doctor and let them know why they are losing your business. find doctor rating forums on the internet and put an honest, but not hostile, report of how you were treated, so those coming behind you can benefit from your search for a good doctor. in the case where one doctor in an office is good and one is not, and i have been there, demand to see the good one.

let's all agree to edumicate as many people and doctors as we can!

And to encourage tolerance, acceptance, and support for ANY health condition where the patient is stigmatized or what they know to be true about their body is invalidated. We have the RIGHT and the AUTHORITY to do what's best for our bodies. Don't let anyone tell you otherwise or make you feel you don't deserve such authority. Let's promote the idea that if you feel something is wrong with you, something is, and stop this blaming of the patient for issues doctors just haven't figured out yet.

(If only their were an emoticon for a fist raised into the air. )

[Ruth52]

"Quack like a Celiac" I like that!

Using another illness as an analogy - how do you prove you have something like depression? There isn't a blood test or a biopsy for it. But untreated depression makes life miserable, dark and life threatening.

For me I am grateful that I stopped eating gluten when I did even though it has meant that I have been unable to attain the "gold standard".

Ruth.

[Helena]

The only time I get annoyed when people use the term "celiac" is when they do so as they scrape the meat and veggies off of a bun and proceed to eat it (the meat and veggies I mean). . . or say they can tolerate a little bit of gluten. I haven't actually met anyone like that, but someone in my family knows someone who copes with dinner functions by scraping off the parts that she can eat (even though they would be massively contaminated with gluten) and my sister's naturopath thinks that a little bit of gluten may be okay because she knows someone who is celiac who eats gluten.

As for me, I'm not "biopsy proven," but I have the positive blood tests. Yes, I'm glad that they were positive because I always worry that people are going to think that I'm neurotic.

Actually, because I'm at the lower end of my ideal BMI, and because there are a lot of foods I'm allergic to, I'm sure that some people wonder if I have an eating disorder or something. One of my doctors suspected that . . .but he came around eventually. Next time I see him, I'll tell him about my positive blood tests for celiac. Also, I was tested for nutritional deficiencies, and I'm *fine* . So there.